“Our children have been forgotten”

Joanne Griffiths, whose son Ben went from having 300 seizures a day to being a happy 11-year-old boy thanks to medical cannabis, says her family – and others like them – feel forgotten.

“We’re constantly being given a ray of light and then having it stripped away,” said Joanne Griffiths, at home in Preston with her son Ben.

In 2019 after a long battle involving dozens of doctors, second opinions and lengthy hospital stays, Ben was finally prescribed medical cannabis by a private clinician at Portland Street Hospital in London.

But for the family the fight was far from over.

Now 11, Ben has suffered from severe epilepsy, cerebral palsy and autism all his life.

Joanne and husband Paul tried every treatment option available, from conventional anti-epileptic drugs and the ketogenic diet, to exploring surgery (which only had a 50/50 chance) and were eventually offered Epidiolex.

At his worst Ben was experiencing up to 300 seizures a day, with some lasting up to 25 minutes.

Today thanks to a Bedrolite prescription Ben is happy and inquisitive, he can walk unaided, attends a special school and plays with his twin brother and older sisters at home.

But due to a lack of access to medical cannabis on the NHS, almost a year and a half after it was first prescribed, Joanne and Paul are still forking out £2,115 every month to keep their son well.

“It’s crippling, it is a financial burden,” said Joanne.

“There are people who have sold their homes and utilised all of their savings just to keep their child well.

“They have no fixed abode and no idea how long they will need to continue to fund this medication.”

Alongside other parents in their position, such as Hannah Deacon and Matt Hughes, Joanne  joined the End Our Pain group to lobby the Government to take action.

When health secretary Matt Hancock promised medical cannabis would be made available within ‘months’ she thought she could see the light at the end of the tunnel.

But it didn’t happen.

“We thought ‘brilliant’, we can afford this for a few months and then we’ll be able to get it on prescription, but 17 months later we’re still paying,” she said.

Joanne took part in the Department of Health’s review into the access problems, in which it was recommended that trials were carried out to provide the evidence to allow doctors to prescribe medical cannabis. As of yet none have taken place.

However, as far as Joanne is concerned the evidence couldn’t be clearer.

In the last 17 months, since taking medical cannabis Ben has come off epidiolex, reduced all of his other medication and hasn’t needed any hospital scans or trips to A&E.

In December 2018 Ben had an ECG which showed he was having 200 seizures in 18 hour – around 11 seizures an hour. Twelve months later – after months on medical cannabis – it showed  no outward electro seizures at all in 40 minutes.

“That’s evidence in itself that shows improvement of my son’s condition on these drugs,” said Joanne.

“Yet we’re having to wait years for a drug that our child is doing really well on.”

A cost analysis submitted to the local Clinical Commissioning Group by Joanne, found that if Ben was to come off medical cannabis to keep him in hospital it would cost the NHS around £98,000 a year.

Yet Alder Hey Children’s NHS Foundation Trust, where Ben was treated, told the family they had a clear policy not to prescribe medical cannabis until more trials had been carried out.

“Ben wasn’t being treated as an individual,” said Joanne.

“Every child is different and they can’t treat everybody as textbook.”

Earlier this year at the 5 February campaign event, Joanne sat next to Hannah Deacon on the BBC Breakfast sofa as Matt Hancock again promised he would ‘leave no stone unturned’.

Now she is calling on him to stick to his promises.

“We have been forgotten about,” said Joanne.

“The government needs to step up. It’s not good enough just to change the law, you need to make sure that things are in place for the doctors to be able to prescribe.”

“Matt Hancock needs to do what his review said it would do over 12 months ago. He needs to fund these trials now, to stop the parents running out money and the children ending up in intensive care like a ticking time bomb.

She added: “It’s shocking that they are allowing that to happen, they are playing with children’s lives.”

A Department of Health and Social Care spokesperson said: “We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is ultimately one for clinicians to make.

“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.

“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”

Alder Hey Children’s NHS Foundation Trust said they could not comment on individual cases, but in a statement to Cannabis Health commented: “Neurologists at Alder Hey will consider whether a child is eligible to take cannabis based medical products taking into account a number of factors.

“This includes the clinical history of the child, the scientific and clinical evidence for use of cannabis based medical products in particular clinical situations, and published guidance from NHS England and the British Paediatric Neurology Association (BPNA).

“Alder Hey always works closely with families to discuss treatment options.”